Chris brought up an interesting point in his post earlier this week: when a person starts with their first insulin pump, there should be emotional training that happens along with the technical training you receive. In addition to learning how to set your basal rates and where the setting is for BEEP BOOP BEEP volumes, you should also get a heads up on how pumping insulin may impact how you feel, what other people might say to you, and things you wouldn't think about ahead of time but would be "good to know" as you head into the cyborg life.
You feel me?
If so, I'm asking for your input: if you have any experience involving using an insulin pump, what would you want someone considering one to know about the emotional side of using an insulin pump? Please leave your advice/anecdotes/sassy wisdom in the comments, and I'll compile them in another post. Thank you!
Even beyond that... I think there should be emotional training for everyone diagnosed with diabetes... but with actual patient education being poor, I doubt there's much hope for that any time soon!
ReplyDeleteI wish someone had warned me that I would be constantly concerned about my pump coming detached from me and that I would get frustrated with people assuming that I don't have to do anything anymore because the pump "just does it."
To be honest, nothing. I resent when people tell me how I might feel, how I should feel, or how I should behave in response to a change in my life - especially when such things haven't happened yet! The stuff that goes through my head -- nobody knows it better than me, and nobody is qualified to predict how I might feel about a given circumstance.
ReplyDeleteMy first pump trainer, who also wore a pump, was a bit high-strung... and I knew what nuggets of information to take away and which to ignore (like: your battery is down to half-strength? change it NOW!!). If she started talking about my feelings, I would've totally lost it.
Now that I've had time to think about what I was trying to say above, I'd like to clarify. I realize I digressed a bit from the original question and was a bit too blunt. I don't think that emotional counseling, preparation, or whatever should be mandatory. Emotions are a sensitive issue, and if someone wants to discuss them or not discuss them, it should be their own choice, by their own initiation, and on their own terms. Growing up, there are a couple of times where I've been told how I'm "supposed to" feel and was "forced" into counseling sessions that only soured me on the whole concept. (The forcing, not the therapy concept in general). The consequence of that sometimes comes out in my writing. If anyone took my response as an attack on their own ideas or ideals, then I apologize.
DeleteI've never had issues with feeling concerned about wearing or displaying my pump. But I've gone through pump hiatuses that are a direct result of just being burned out and frustrated with the process of changing my infusion sites. The ordeal of having to switch sites, even when I don't want to, and sometimes hitting bad spots or wondering if it will hit a nerve or muscle (shudder)... I've taken breaks because it got to the point where I just couldn't do it anymore. There's the whole other side of setting adjustment trial-and-error and the never-ending insurance coverage hassles, which bring their own emotional notes, but that's the biggest for me. Thanks for asking this Q and compiling, Kim. Hope pump-makers take it into consideration.
ReplyDeletePeople should be prepared for the odd feelings - at first - of having something attached to their body ALL THE TIME, and that they will have to accommodate with clothing, etc. It's the ultimate reminder 24/7 of your disease, and it hangs on your body like a badge. Some people will come up to you and ask you what the bump is under your arm (I wear an OmniPod pump, so no tubing), so be prepared to realize that you are now a walking billboard. The benefits far outweigh this, and I pretty much forget it's there so it doesn't bother me any more, but it did take some getting used to!
ReplyDeleteThings that I would have liked to have known is that you don't have to deal with all of the advanced settings of the pump on Day 1, and some of them not ever, depending on how you choose to manage your life on insulin. I remember when I first went through orientation with the pump, I got really overwhelmed by the information overload and had to say, "Look, can we just set the basal rates and you show me how to do a single bolus and see insulin on board? And turn the alarm off? I'll figure out the rest later." And I did, in my own time, as I needed it. There are still features on my pump today that I don't use, and I've been pumping for... doing math on my fingers... 10 years? Holy cow. Anyway, it is good to know now that I can make the pump fit my diabetes style, and what works for me. And that's okay. Even if it doesn't necessarily take advantage of every feature on the device.
ReplyDeleteI was fortunate that someone (in the #doc, not a healcare professional) had prepared me for the 'newly diagnosed' feeling of the first few weeks/months. After almost 20 years of injections I knew what that felt like, but early on with a pump I just had no idea whather this, that or the other thing 'felt right' or what to do about it if things were going a bit off kilter. How aggressively to correct... How long to leave it... When to wait and see... That would have been a lot more difficult if I'd not known it was coming as part of the package.
ReplyDeleteThe other thing that I don't think was emphasised enough was how long it might take to actually get the hang of things. Some stuff I had read made the transition seem like a breeze, and while I got to grips with the basics/general attachment thing pretty quickly, I reckon it was at least a full *year* before I really felt comfortable with my little android appendage and began to see what all the fuss was about in terms of improving BGs. Some of those first 12 months were not the easiest and I know I'm not the only one who has been tempted to lob my pump out of the window in the early days.
I don't know about the emotional impact, but learning more about the practicality issues being attached to something 24/7 would have been helpful. (E.G - sleeping, how to wear dresses or clothes without pockets, intimacy, swimming, etc.)
ReplyDeleteI think it's a good idea to have a child practice answering "What is that?" kinds of questions in a confident and concise manner. B. once overheard someone saying (about him) "I HATE that kid. He thinks he's so great because they let him use an iPod during school." One of B's friends told the hater it wasn't an iPod, but a medical thing. "It's for his diabetes!" But since there's not always a nice friend around, some practice would be great!
ReplyDeleteI think it depends on your age. The transition was much easier for me because I was older (48). But... I think any kind of follow up with a new pumper (after a month, two months max), with answers tailored to that individual's circumstances, would be extremely helpful. Wish I had that.
ReplyDeleteI've only been pumping a little over 5 months after 3 yrs on MDI. I wasn't prepared for the lack of sleep getting my night basals set and adjusting. I went slow hoping to avoid night lows and I could probably still adjust a little. My first cartridge/site change on my own I bent the cannula, and when I realized and changed again that one bent as well. I was ready to throw in the towel right then, so I wonder every time for those first couple hours if it's bent. Fast acting insulin as your basal acts differently than Lantus. It seems to take longer for high numbers to come down with all fast acting (YDMV) my first a1c was no different, but this next one could be a little different, but I tend to be a little conservative with insulin because it is a little scary, I used to be afraid of it, now I say I have a healthy respect for it. There is the issue of where are you putting it. I wear pants most of the time so it's not a huge issue, but Chris probably won't be wearing dresses;) on MDI you can put it all away and forget it for a while, that's a little difficult being attached. Though I feel less apprehensive about using my pump in front of others than I did with syringe/pen. Just let him know he may get frustrated at first because he knows how Lantus works and when things may seem to not be working like they should don't give up, work through that, and if it doesn't it's ok.
ReplyDeleteWhile I don't think there has been a huge emotional impact on me directly related to wearing my pump, I would say that one thing I didn't consider was that I was making my invisible disease visible. I get a lot more questions about diabetes while wearing a pump than I do when I'm not wearing it or when it is not visible. I don't mind this though, as it is an opportunity to dispel myths and address people's curiosity. There is sometimes a bit of stress in finding a good place to put my pump, particularly if I'm wearing a dress/going to a fancy event, and I certainly think about how others may view my pump (particularly if they incorrectly think it means my diabetes is really "bad") in new dating situations. I'm not sure that I would have benefited from any prep ahead of time - all of these are things I've worked out on the fly as they happen.
ReplyDeleteAlso I love that to post I have to "prove I'm not a robot"......despite all the robot parts I'm currently wearing :p
DeleteI always have people ask me what is that. Always seem to happen mid sentence of a conversation. "So we are going to shoot at this loca... what is that?" That can be very jarring and embarrassing if you don't want your diabetes to be announced. Preparing for that eventual discovery can be a good idea. That way your emotions are not shaken and you can have a witty comeback or little speech about what it is.
ReplyDeleteLess hugs from husband and kids , cause they're afraid of ripping out my site.
ReplyDeleteI agree with StephenS that it might depend on your age. I had no emotional issues with getting a pump. In fact it helped me become more open and comfortable with my diabetes. But I was 50+ years old and that's much different than a teenager or young person in their 20's/30's.
ReplyDeleteI think what was emotional for me was getting too obsessed about always checking numbers. When using a CGM with the pump, I found I was testing MORE because I wanted to be sure I could really trust it. I guess you eventually more past that. I never mind if people see it, but I hate the question that ALWAYS comes... "You must have the bad kind" Bad kind? IS there a good kind? LOL!!!
ReplyDeleteI would you someone considering a pump to know about the how difficult it can be to be patient and wait for the changes to kick in before saying I give up. It's not easy even though this little gizmo attached to us can make life easier sometimes it makes it harder. The glucocoaster sometimes rolls higher and lower with a pump and there are a lot of emotions attached to the flexibility/constraints that the device provides. Also it's okay to be frustrated with it. Just because it's new and shiny doesn't mean that you have to love it immediately. If you decide it's not for you after giving it a fair shot (and that changes from person to person and doc to doc), it's okay to go back to shots/pens/inhaling/whatever-delivery-method-you-prefer.
ReplyDeleteThe frustration of having to plan out your wardrobe for the week based off where your infusion set is. Also, being told how to spot a leak would be good. Oh, and that its okay to hate your pump some days because the pump clip is such a PIA. Seriously Animas your pump clip has nothing on MiniMeds.
ReplyDeleteThat the pump is not magical. It won't cure all your problems and lower your a1c overnight. It takes work: basal and bolus rate adjusting, and is only as good as the time and effort you've put into programming it. (eek..is that mean?) I think we put such high expectations on a pump, and we get so excited that it'll make our lives all perfect. But it's still us trying to control numbers. Just with a little computer.
ReplyDeleteMy daughter would say the scarring bothers her. Her pump site scars (after ten years) are hard on her. Even if she unplugs to swim..you can see all the scars. And she gets asked about them.
That you might be nervous to sleep, to trust it to continue (and not malfunction!) each night.
That if it's your small child, you'll have fear that they will play with it and push buttons (and chew the tubing!) in the night.
And I agree with Rachel: that people assume the pump does everything for you. Ha! Bionic pancreas, we can't wait for you! : )
I sometimes feel like I am the only person who has never really had pump burnout. Honestly, I was so excited to be off the 12-15 injections a day I was doing on MDI that my emotions upon getting the pump can be adequately described as "OHEMGEE THIS IS AWESOOOOOMMMMMEEEEEEEEE!!" After coming off the pump for a few years due to losing my insurance and getting back on it after getting insurance again, my thoughts are still the same. I really have no problems with the pump at all, and I am completely all right with being attached to a machine. What gets to me, however, are the comments. How I feel about the ones I get really depends on the nature of what's said - if you are genuinely curious and wanting to learn, I am more than willing to teach. If, however, you want to make comments on how I must have eaten too many sweets or I am too skinny to be a diabetic, I will be more than happy to tell your tubby butt that by your own definition, you had better watch out - and you may want to put down the damn cookie.
ReplyDeleteIn short, I would tell someone dealing with the emotions of going on a pump that I have plenty of snarky comments to tell ignorant people who think they're medical experts because they watch Dr. Oz at home in their underwear every afternoon. If you don't have anything nice to say and want to learn how to say it, come sit by me. ;)
I got my first pump 26 years ago, a MiniMed 502. I've also used Animas, Cozmo, and Omnipod.
ReplyDeleteMy advice on emotions: you'll feel great not having to take regular injections, but the tubing (or pod) is still a reminder that you have Type 1 diabetes (T1D).
You will likely feel better overall, thanks to pump basal rates, and this may make you feel that you don't need to test glucose levels as much -- resist that temptation. Also, try to avoid expectations that the pump solves all your challenges managing T1D. You will still have challenges, just different ones like tube and site clogging. Activities like swimming, water skiing, and being intimate will be different.
Above all, remember that the pump is a tool to help you better manage T1D; like any smartphone or computer, it won't be perfect and won't replace your need to manage your own health.
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